Hello. I joined a while back to ask advice about MDS as my Dad had been diagnosed, and just wanted to understand what he was going to be facing and, by association, his family. I didn’t post on that occasion as I felt I might be betraying his confidence that he didn’t want any outside the family to know at that time. I’m writing now as his health has deteriorated in just a week.
After diagnosis he had undergone a couple of bone marrow aspirations, and then a few blood transfusions. From that he was put on the transfusion ‘team’ at the hospital. He had a blood transfusion last Tuesday and, feeling better again, was told he could have a ‘quality of life’ where he could go shopping with my Mum occasionally, and enjoy his favourite tipple on a weekend…a small glass of whisky. From that, he had another transfusion the next day, felt dreadfully ill that night, was admitted via a 111/999 call to A&E, spent the day - and night - having antibiotics, to quell an infection (from or in white blood cells?)…and now he has been sent home to die??? He has been told he is terminal…4 to 8 weeks to live? Possibly admittance back to hospital, and from there to hospice care?
I don’t understand how he has gone from quality of life to terminal in just three days.
My daughter passed away recently, and we are still reeling from the speed in which infection ravaged her body.
Right now I am numb. I am an only child, my mother is suffering memory issues, and my husband has end stage CKD and is on home dialysis. I had already decided to seek advice on how to deal healthily (if there is such a thing) with grief when my daughter died, and we are now seeing a counsellor from the funeral home. She mentioned anticipatory grief, and with both men having possible reduced mortality, I had been reading about that. With the death of my daughter I tell people I am devastated but functional, but now…I just feel numb.
If someone could just explain how MDS can go from 0 to terminal, please? It might help us all understand this dreadful situation. Thank you.
Hi ZAppletush and a very warm welcome to the Macmillan Community but sorry to hear about your dad.
A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type or support challenges will help you a lot……. I have a completely different type of cancer and treatment journey.
The New to Community is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated……
Supporting someone with incurable cancer
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page and putting
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.
Do get back to me if you need further help navigating the community.
